Making the holiday season joyful for your loved one

Bonnie Sandler, S.W.

The holidays are quickly approaching and reminders are everywhere. Christmas carols can be heard on the radio, and there are lights and decorations every which way you turn. Gift buying suggestions overflow our mailboxes.

Whether you celebrate Christmas or Hanukah, the holidays are times for celebration, family dinner gatherings, and party invitations with the underlining expectation of comfort and happiness. This time is difficult for many. We remember our loved ones who are no longer with us, we worry about having enough money to buy gifts, and some of us crumble knowing our lives are less than perfect during this so called festive time.

We see family and friends who are not well, who are going through hard times, and we look at our own lives questioning our own level of happiness. But what about the caregiver? How will she celebrate the holidays? How will she get through this time with all she has on her plate, living the “36 hour day?” Will she be expected to buy gifts, cook and entertain family and friends?

For the caregiver who struggles to get through each day, I hope that she will be surrounded by loved ones who will recognize her life and respectfully include her in their holiday time if that is what she wants. Some people prefer to ignore the holidays and this should be respected. Well meaning people may pressure others to join them in their festivities and do not hear what is really being said to them. Take the time to listen and to respect the wishes of others.

A precious gift for a caregiver is time. Offer your time to free the caregiver to be able to enjoy activities of her own. If you want to add to this, think of a gift certificate for some body pampering, or for a favorite boutique. Invite her out to a movie and dinner and arrange for someone to stay with her loved one.

Holidays bring memories of past times, better times, and with these memories come sadness. If we are dealing with a sick loved one, we wonder what the new year will bring. Will the loved one be here for the next holiday? It is easy to suggest that we focus on the present, the days of the holiday, and to make the best of this time. The suggestion is easy, the follow through is harder. There are no magical answers.

Someone with Alzheimer’s should not be ignored during the holiday season. Think back to how these times were spent in the past, before the disease. What did the person enjoy about the holiday season? Was it the food, the songs, a decorated tree, the opening of gifts, small or large gatherings? Plan to include your loved one in some of these activities. The treat of a turkey dinner with all the fixings, potato latkes and sugar donuts, a beautifully wrapped gift, some old time music or movie that can be enjoyed by all. Keep in mind that these activities should not be overwhelming, but at a level that the person will feel comfortable.

I see too many AD individuals forgotten during the holiday time. People may think that they won’t really understand a celebration, but this is not true. A special dinner, dressing in pretty clothes, a gift, hearing lovely music, seeing beautiful decorations can all be a joyful experiences.

We tend to think that everyone else’s life is perfect and that it is just ours that is challenged. Intellectually we know that this is not so, but during holiday time we are bombarded with images of happy people enjoying celebrations. No one is ill, no one is alone. Each year we read about how difficult the holidays are for so many people. Decide what works for you and your loved ones. Focus on doing simple things to bring a smile to the face of someone you love.

Do not forget the caregiver; do not forget the Alzheimer individual. Even a person far into the disease can smile and feel joy.

Comments and questions can be sent to bonnie@servingmontrealseniors.com and may be used in future articles.

Before you sign on the dotted line

Bonnie Sandler, S.W.

The decision to move into a residence, either for you or a loved one, is emotionally exhausting. There is relief after your choice has been made, but still more remains to be done – the signing of the lease.

Leases vary from residence to residence. Many will use standard leases with added or separate clauses regarding care, while others will have a customized contract. Generally, a personal care home (or foster home as some choose to call it) is all inclusive without any added costs, other than medication and personal items. There are no extra charges for showers, laundry, food, assistance with dressing, and inhouse entertainment. This should be specified in writing when signing an agreement.

I have clients who encountered difficulty with lease signing since the monthly cost varies according to care level. Should care needs increase, the monthly cost increases. Most large residences do their own evaluation to decide on the hours of care.

This is all fine but timing can be an issue. A family I worked with chose a high-end care facility for their parents. They were obliged to give their landlord 3 months notice in preparation for this move. Since the new residence was not prepared to evaluate their parents 3 months before the move, an exact monthly fee could not be determined.

While the residence felt that the estimate of care was accurate, there were no guarantees. The residence would not sign a lease until after the couple had moved in and an inhouse evaluation of care was done. If the assessment concluded that more care was needed than the original plan, the monthly costs would increase. An added half hour of care a day is approximately $400 a month. The family felt insecure without a signed lease and a definite price, but in the end they were able to sign for the original price, much to their relief.

A more worrisome example is a family who gave the required 3 month notice to cancel their old lease and planned for the move based on an estimate quoted by the residence. When the individual was evaluated just prior to the move, the care level had changed and the monthly cost increased by over a thousand dollars a month.

Many larger residences offer a la carte services. Pay attention to the prices. Although services may not be needed at move-in, they may be needed further down the road. You don't want to have to move a second time because of rising costs. Nursing facilities or special care floors are often all inclusive.

Address the difficult questions. Should more care be needed than the residence is able to provide, find out how much notice is required for a move to another facility (if it's a move to a government nursing home it's one month). What are the monetary obligations in the event of death?

I fail to comprehend why residences continue to charge the full amount when an individual is hospitalized for a long period of time. No services are being provided, no meals are taken, and yet no reduction is given. Shouldn't the person just be charged for the rental of the apartment? Shouldn't this also apply when notice is given and the person is no longer living there? Shouldn't this be the case in the event of death?

When it's time to renew your lease you may be asked for an increase. Check if the increase is just on the rental portion of the apartment and governed by the rental board. Ask all your questions before signing on the dotted line. Have agreements put in writing and don't just rely on a handshake. Residences are bought and sold and personnel often change. Be aware and be prepared, and take someone with you who can help with the negotiation and review the lease for you.

Questions or comments are welcome at bonnie@servingmontrealseniors.com and may be used in future articles

What is a Mandate and do you need one?

Bonnie Sandler, S.W.

In my assessments of families dealing with Alzheimer’s, I will ask whether there is a mandate. Some families are not clear on what a mandate is and often confuse “mandate” with “power of attorney.”

I explain to the best of my ability and advise people to contact their notary or attorney for further details. But knowing the importance of accurate information, I turned to Joyce Blond Frank, attorney from Elder Aide, who provi­ded me with the following information.

Joyce says it’s important to know that in the Civil Code the mandate is the same as a power of attorney and the Mandate Given in the Event of Incapacity has its own chapter.

A Mandate Given in the Event of Incapacity is a document that is prepared while you are fully capable of making decisions. You can designate someone to provide needed care and protection with regard to health and property, instructing chosen people to carry out your wishes when you are no longer capable of doing so. You can assign one person to handle all these matters, or divide the responsibilities of financial and health care between two people.

If a mandate is not in place, then should the time come when decisions need to be made, and you are deemed incapable of making these decisions, then someone will be named for you. When there is no mandate, the court may decide that you need “protective supervision.”

In this case, if there is nobody to care for you, the Public Curator will become responsible for your assets. The care of the person, except in very rare cases, is left to a relative, friend, or the facility where the person resides. To avoid this, it is best to have a mandate and choose the person or people you trust to carry out your wishes.

Joyce goes on to explain that the Mandate Given in the Event of Incapacity should not be confused with a will, which takes effect only after death, nor should it be confused with a power of attorney, which allows someone to act for us in activities that we may be perfectly able to do on our own, such as banking.

A mandate can only take effect after a representative of the court decides you are no longer able to care for yourself or manage your own affairs. This is called the homologation of a mandate. The judge or clerk will study reports of both a physician and a social worker’s psycho-social evaluation before arriving at a decision, and may also listen to what you have to say. This means that as long as you are capable, your mandate will not be put into place.

I am often called upon to provide these psycho-social reports for the homologation of a mandate. At times the situation is urgent and the lawyer will take the proper steps to speed up the process. In general, the homologation of a mandate could take a few months.

In order to protect yourself for a possible time when you are not able to protect yourself, a mandate is strongly advisable. I have a mandate and encourage my family and friends to do the same. My daughter often reminds me that should I become incapacitated she will be making the decisions regarding my care. It is a gentle reminder, or not so gentle depending on the day, that I had better be nice to her. As the bumper sticker that I often see on cars reads: “Be nice to your children, they will be choosing your nursing home.”

Comments and questions are welcome at bonnie@servingmontrealseniors.com and may be used in future articles.

Sharing secret thoughts

Bonnie Sandler, S.W.

Alzheimer's Disease is a long journey taking a family through many stages as the disease progresses. Each stage brings different reactions and emotions.

The early stage is difficult on families because the AD individual is aware of the changes they are going through: memory loss, confusion and difficulty performing familiar tasks. The person may become depressed as they recognize these changes and losses, over which they have no control. They are often treated with antidepressants.

Still struggling with the diagnosis, families are relieved to know why their loved one's behavior has changed. They are also confused because there are many good days with no symptoms.

In the later stages, the family witnesses their loved one's inability to manage their own care. They no longer recognize faces – they have a blank look in their eyes that makes us wonder how much of the person we knew is still there.

My friend would visit his mother once a week in the nursing facility where she lived for several years. She had been an accomplished professional and a strong maternal force. My friend spoke to me of being emotionally wiped out by these visits. He no longer recognized the bedridden woman as his mother and had mourned her for years. She no longer recognized him either. When she died, he felt a mixed bag of emotions – relief, and guilt at feeling relief. At the funeral, he told me that her death had been a blessing.

Family members ask what they would want for themselves if they were in this position. They remember their family members as independent and strong people and feel that they would never want to be dependent on others for all their needs.

One important purpose of a support group is being able to share thoughts with others who will nod in understanding and not sit in judgment. It is a safe place to share feelings of anger, frustration, sadness and grief.

Some of these thoughts would be viewed by mainstream society as taboo. But nothing is taboo among people going through similar experiences and feelings.

Take advantage of our short summer

Bonnie Sandler

It’s not a coincidence that requests for my social work services decrease in the summer months and increase dramatically come fall. As we all know, life in Montreal includes remarkable seasonal changes.

We naturally spend more time outdoors when the weather is warm. Leaving home requires less preparation, and walking outside doesn’t mean struggling with snow, ice and the fear of falling. Walking not only provides a source of exercise but is therapeutic since it is known to decrease agitation. The caregiver is well advised to take advantage of our short summers while they last, but it’s best to avoid large crowds and noisy events. I would think twice, for instance, about attending a fireworks exhibition. Consider activities that your loved one enjoyed in the past — picnics, park outings, drives to the countryside, small outdoor musical concerts, short cruises and even visits to a driving range for those who played golf.

Attention to particular behaviours of the individual should be addressed. For example, sit where the possibility of an early departure would be the least disruptive. Don’t forget sunscreen, a sunhat and water. Avoid especially hot temperatures that could cause discomfort and dehydration.

Don’t be surprised if your loved one insists on wearing a sweater even in high temperatures. Some AD individuals dislike air conditioning and overdress to stay warm. It can be difficult for the caregiver who feels the need for air conditioning yet must keep it off to please their loved one.

Sundowning is a behavior of many affected by AD. It occurs in the late afternoon or early evening hours as the sun sets and darkness appears. Agitation and anxiety increase, making these few hours especially trying. Some professionals have compared Sundowning to Seasonal Affective Disorder (SAD), when depression occurs due to fewer daylight hours. Keeping the home bright during this time can help.

The words of the song by Gershwin are summertime and the living is easy… I don’t promise easy, but I do think life, for both the caregiver and the AD individual, is easier with summer weather.

Please address comments and questions to bonnie@theseniortimes.com.

To drive or not to drive

Bonnie Sandler, S.W.

All too often when I ask families about their loved one’s driving abilities after a diagnosis of Alzheimer’s, I’m told there’s no serious concern. After further questioning it’s not unusual to learn the individual is “only” driving close to home (where accidents never happen?) – or only lost their way a couple of times, or scratched the car in the garage. Yet when I ask whether they would allow their children to be in the car, the answer is a firm no.

Who is protecting the neighbours’ children? I’m not insensitive to the significance of driving to someone who has been driving most of his or her life. Having car keys taken away can be devastating. But driving demands good judgment, skills, reflexes, concentration, and sensory abilities.

The burden of this decision should not be left to family members. In California, physicians must report a diagnosis of Alzheimer’s to the health department, who in turn passes this information to the motor vehicle bureau. The Quality Standard Subcommittee of the American Academy of Neurology recommends driving tests be conducted every six months for those with AD.

Why don’t we have a similar process in place here? I suggest that doctors be obligated to report a diagnosis of cognitive impairment to the SAAQ, who should mandate frequent driving tests. This would relieve the family of having to decide where to draw the line. Caregivers have enough on their plates without having to play the enforcer in this respect.

In the meantime, these signs should help families know when it’s time to schedule a driving test:

• Driving too slow or too fast
• Unable to find the way to a familiar place
• Slow in reacting to a new situation
• Not observing traffic signs
• Hitting curbs
• Agitation when behind the wheel
• Confusing the gas and the brake pedal
• Scratches on the car
• Trips taking longer than usual

Above all, safety is not negotiable!

Contact Bonnie at bonnie@theseniortimes.com.

Enjoy the moment: embrace the experience

Bonnie Sandler, SW

Caregivers tell me about shared laughter and special moments with the person they’re caring for. But most articles emphasize the stress related to caregiving. What about the tears of laughter and warm loving times?

Caregivers will be more likely to find these special times if they learn to balance their lives, are members of support groups and are able to ask for help. Overworked and exhausted caregivers who insist on doing everything themselves will be less likely to experience these times. How sad. Stress robs us of our ability to be clear-headed and make smart choices.

The spouse who feels committed to care for their loved one without any outside help, whether it be out of love, loyalty or obligation, will often end up burnt out and unable to enjoy special moments. They have the least to offer their loved ones with regard to quality of life. They tend to the necessary tasks, but they deplete their energy by not enlisting help. This leaves them with little if anything to offer in terms of love, kindness, understanding, and warmth.

I have met many cognitively-impaired individuals who have a great sense of humour and interesting stories to share. They communicate through touch and facial expressions, beautiful music and art. Although Alzheimer’s robs the person of many of their abilities, their essence is still present.

The individual may respond inappropriately to situations, but a good caregiver may be able to find a way to make the most of an awkward experience. Alzheimer’s is a long and difficult journey and different stages will bring different behaviours.

A friend told me that her mother now enjoys singing old crooner tunes with her and eating ice cream cones – experiences they haven’t shared in years. Yet clothes shopping, which they used to love, has become a bore. As a caregiver you need to be flexible enough to adapt to new experiences.

Those of us with most of our cognitive abilities intact find living in the moment a difficult if not impossible task. But a person with Alzheimer’s lives mostly in the moment – their memory impairment prevents them from remembering yesterday, and tomorrow doesn’t exist for them. How many of us are able to do this? If there’s no concern about what others think about us, that’s truly living in the moment.

Someone with Alzheimer’s may start singing or dancing in the middle of the street while people stare. This is a joyful time for them. The question is whether the caregiver can join in or try to stop the behaviour out of embarrassment. A good moment shared is a joyful time. Allow yourself to enter the moment. Remember who the person you are caring for was before the illness and get to know the person he or she is now.

Tips for finding joy in caregiving:

• Don’t do it all by yourself
• Find time for yourself
• Continue with activities you’ve always enjoyed
• Join a support group
• Educate yourself
• Don’t fight the disease
• Forget the shame, go past it
• Do not allow others, ignorant of your journey, to judge or advise
• Surround yourself with people who care about you and understand your situation

Comments and questions can be addressed to bonnie@theseniortimes.com.

Worrying about the glass of wine

Bonnie Sandler

In my assessments of individuals with cognitive impairment, I have noticed that many include a history of lifelong struggles with excessive worrying, anxiety, obsessive-compulsive disorder, and/or depression. This alone is something to worry about. Children of affected parents are concerned about their own future as it is, and now we have more to worry about as we try not to worry, knowing that excessive worrying could be a factor in this disease.

People who have experienced clinical depression are 2.5 times more likely to develop Alzheimer’s, according to a study published this April in Neurology, the journal of the American Academy of Neurology. If depression occurs before age 60, the likelihood increases nearly 4 times. There are several theories as to why this may be, and further studies are expected to explore the relationship between depression and Alzheimer’s.

Recent headlines warned women that drinking a glass of red wine daily might raise their risk of breast cancer. Should we worry? I was happier when I read that there may be constituents in wine that protect against dementia. More confusion. Are we to choose which disease we would most like to prevent? Are these studies causing us more anxiety, therefore putting us at greater risk for Alzheimer’s? Dr. Nathan Hermann, head of geriatric psychiatry at Sunnybrook Health Sciences Centre in Toronto, cautions that this is only "one of a number of studies" that have examined the issue and that "the literature is very divided on whether depression predisposes to dementia or not, and is seriously flawed methodologically, and there are no firm conclusions that can be made." So he's not stressed about it, but how do the rest of us know when to worry? Short of digging into the entire body of peer-reviewed research ourselves, the best antidote to this kind of news might just be a good Merlot.

We all need to find ways to relax, but it is especially important if we are caregivers living the 36-Hour Day (like the book of the same name). What works for one person may not be the right stress buster for another. I like to relax after a hectic day by having a glass of red wine. I rationalize that it’s good for my health. A hot bubble bath surrounded by candles also works. But does the glass of wine enhance my risk of breast cancer, or prevent dementia and heart disease? Will I worry now about having this glass of wine? Will the worry affect my cognitive functioning as I age? Will I have the opportunity to age if I have the wine?

Tonight, after a stressful day, I plan on having a glass of red wine and treating myself to a long hot bubble bath. I won’t allow myself to worry. I will simply enjoy my personal choice of de-stressing.

Please address questions and comments to bonniesandler@gmail.com.

Caregiving with dignity

Bonnie Sandler

Language for children should not be used for adults, regardless of any cognitive deficiency. Adults with care needs should be treated with dignity at all times. This includes the use of proper language:

• Diapers – this is a word used to describe a product designed for infants and children who are not yet toilet trained. I cringe when I hear this word used around older adults. When dealing with individuals with incontinence issues we should not use the word diapers. Protective underwear, added under garments are just some examples of terms that are dignified and respectful.
• Babysitters – are sitters for babies. This term should not be used for adults who are unable to be alone. Using words like companions or caregivers is preferable.
• Activities – toys are for children. Although there are toys for adults it would be best to refer to these by their specific names ex: puzzle and not toy.

Bathing is another area where we have to be sensitive to a person’s dignity. Many individuals who require assistance with bathing and or dressing are uncomfortable being naked in front of another person. There are ways to keep a person’s body covered while providing the needed care. If the individual is feeling uncomfortable they may become agitated and thus combative. Using specialized clothing that covers parts of the person yet allows for full bathing/showering will calm the person and preserve his dignity. Even properly placed towels can be used.

Celebrations – Birthdays, anniversaries and special occasions need not be ignored because your loved one is no longer able to remember these special dates. Families can continue to honor these times with cakes and goodies and specially chosen gifts for their loved one. Comfortable slippers, a warm shawl or wrap, costume jewelry, or an activity appropriate to that individual are just some ideas. A CD with old time familiar music, a DVD of old sitcoms such as ‘I Love Lucy’ or special musicals can be enjoyed by all.

These are just a couple of tips for preserving your loved one’s dignity and honouring them with celebrations of special dates. As a caregiver you will discover different ways you can adapt your caregiving to ensure the dignity of your loved one.

Comments and questions can be sent to bonniesandler@gmail.com and may be used in future articles.